I sympathise with you in your position. My husband was diagnosed on Nov 5th 2005 and died May 2nd 2006. On Nov 21st they operated to do a resection but found that the cancer had spread to parts of the body not visible with diagnostic tests. One month later my husband came home. He also declined chemo, believing that at his age (66) it would weaken his total immune system and he would be no better off in the long run. We decided on other more holistic approaches but it was not enough.
Since then I have been visiting this site regularly. I follow the discussions which are mostly about the various chemotherapies that are being used to try to delay the onset on the disease. There is no cure. Resection with clear margins seems to be the best option but is not available to everyone. For everyone else chemo can postpone the onset, - a decision that has to be balenced against the quality of life during the process of treatment which has inevitable painful/fatiguing side effects.
Reading the discussions here, I had started to think that perhaps my husband should have at least started on the chemo, since it would have probably extended his life. However I have been reading the blogs over the last week and I have shifted my opinion somewhat. It seems to me that once people take the medical route, it is often like a row of dominoes as one treatment causes another problem, more intervention and more pain and discomfort. The initial treatment seems to work but there seems to be a tipping point where the disadvantages start to outweigh the advantages. M's experience of hospital made him refuse to even consider being readmitted to hospital. In the end he had a gentle death. (see In remembrance) We, his family were in control and able to do what he wanted rather than being in the hands of the medics with ever more piecemeal treatments to deal with the consequnces of the previous treatments.
I do wonder if the mantra of 'going on fighting' when the battle is really lost is best for cc sufferers. When treatments are no longer working, pain fatigue and discomfort become everyday experience and other serious complaints are presenting one after another, is it the best thing to accept the inevitable and seek a 'good death'. For myself I am certain that it's what I would want (although I know that there are people for whom however uncomfortable, life is everything)
My husband was treated by an Indian nurse whose view was the death is part of life and the move between the two should be to help dying accept and move on, not to go on fighting with increasingly intrusive and painful treatments - often unproven.
What I now think is that
M should have at least started with gemcitabane which is usually well tolerated. If the consequences were unacceptable to him then he could have stopped it when he wanted.
We should have started earlier with our holistic doctor, since she was very busy and we had to wait a long time for an appointment.
And finally to stop trying to 'save' him with new treatments, pills and potions. What he wanted from me was to talk to him, sit with him, do relaxation together and gentle exercise, massage his body, read to him, light scented candles and play music. Play backgammon and chess with him , get friends to visit, look at the family photos and videos, do everything to make those last days precious and enjoyable.
There are far more treatments available in the US (we are in the UK) but all of them with side effects. I feel that reading the blogs, they did extend life and the families were able to have weekends away together which was a great outcome but it seemed to me that a time came when the issue became one of acceptance and making the life of the patient easier in his final days.
I would urge you to read the blogs for a fuller picture of the disease and its development.